Crowdfunded awareness campaigns including billboards

Appreciate all of this, @Ash

So if I’m following right, do you think it would be most apt for an awareness message centered on something like “Call your representative today to request increased funding for ME/CFS (or LC)?”

 

Definitely in North America, but some of the campaigns have also used bus stops and other ad spaces in or around mass transit.

 

Yes, absolutely.


I realise I sounded like I didn’t like this particular awareness campaign. Apologies I didn’t explain myself well. It’s not the case, I love the visual splash.

I have a background fear and distrust of ‘awareness raising’
in general without it being based on specific demands.

That’s because I’ve had a diagnosis of ME for so long, and I’ve never had anyone treat me badly because they didn’t know what ME was. But I’ve had plenty of people treat me badly because they presumed to know what it was based upon knowledge they’d acquired here and there from medicine or media.

The whole way through the decades of organised dismissal and mistreatment the BPS crowd have claimed it’s terrible that pwME are so sick (…in the head) and that something must be done they have always weaponised the concept of ‘public misconceptions’ (that they seeded and continue to spread) against pwME, and insisted the way to alleviate our suffering is through more resources going towards them.

I don’t think charities making somewhat vague (and sometimes heavily misguided) attempts to redress this has worked out very well in terms of public campaigns. There have always been specific requests for charities but these have often got lost or overshadowed.

When individuals like us think about campaigning I think it’s good to keep a tight focus on the specifics and on actions that other individuals can do that will help us. Short term goals can keep people motivated. Making one phone call is a great one. It’s enough effort for a start of a personal connection to the issue. But it’s not so much as to be out of reach for many healthy individuals.

 

I assume this was already shared today? Any thoughts on this, @Ash? (or anyone else too)

https://twitter.com/user/status/1717852574412325285

 

Discussion of costs:

 

I like it. I like the design and I like the wording. Strong.

Assuming if you look up the website mentioned on the bottom there will be more concrete asks for people, who they can contact to help push for the funding for clinical trials etc

I would hope for a landing page with instructions for supporting their campaign

 

We'd like to replicate something like this in our state of MN, USA - a visual, clinical trials demand - stressing no help/treatment. But we keep struggling where to direct people (ie, NotRecovered.Org in this instance or Berlin Buyer's Club on the previous) to help. Open to any suggestions if any have here.

 

It looks a good poster.

It is hard to know what clinical trials to invest in with so little to go on but this puts it bluntly and may make a few people think, as a result. Paradoxically, because most people will not know what ME/CFS is, it may actually promote more interest and discussion by people asking what it is all about.

And enough people will have encountered LC themselves or in friends or relatives for that to resonate a bit.

And asking for trials shows that the creators of the poster know what they are about.

If I saw that (and hadn't been involved already), as a doctor, I would stop and think.

 

Glad you think it might catch your interest too. Fingers crossed a few more healthcare professionals in biomedical field will agree.

 

The issue I have is that outside our patient community, the general population still doesn’t know or understand what ME/CFS is (or myalgic encephalomyelitis, or even chronic fatigue syndrome). Long Covid May be slightly better known, just slightly.

Then the messaging re: needing clinical trials- is mainly aimed at physicians and funders, but then, clinical trial for what when there is no target? Spices? Supplements? Behavioral and exercise treatments?

 

The ones at train stations are good too - I always felt due to the longer wait whilst on or waiting for a train it’s like that poster in the waiting room scenario


Plus of course if a commuting or holiday route then a reminder of those unable to do it as they used to

 

But isn't that sort of the point?
There are lots of things I only came to know about because of billboards.

 

I think those huge billboards are a good idea, as nothing else has that much visual impact.

The best ones are positioned where traffic tends to back up at busy periods. I can still visualise some of the posters I saw on my way home from a job I left in 2013, as I spent at least five minutes queuing on the approach to that junction, every night, with nothing else to look at.

Led by Donkeys (a British campaign group) has used billboards very effectively too. They found a way of making the old-fashionedness of the medium really work for them.

 

Nothing else works. So why not try this? I still remember one or two specific billboards from when I was stuck at traffic lights many years ago.

 

It's definitely a country-by-country thing. In the US, billboards are common along freeways (motorways) and major roads.

 

Thread with some recently funded billboards.

Photos are only indicative of placement, but it shows how the campaign is doing.

 

Canute Road, Southampton
North Street, Havant
Romsey Road, Southampton
Burrfields, Portsmouth

https://twitter.com/user/status/1732024156022018140

 

This is a cheap way of drawing attention And making noise. Animal welfare groups use this method too. This along with billboards and petitions could be used in #MECFS and should have been before! No more lame social media campaigns that do not move the needle. They have a letter and petition too and put ME campaigning, what little there has been recently , to shame.
https://twitter.com/user/status/1732331167389503932